June 30, 2011

The Good News: Clara hasn't lost any weight since we pulled the NG tube.
The Bad News: She hasn't gained any either (okay, well one ounce, but not significant.)

I was pretty bummed out this morning at the doctor to see that Clara hasn't put on weight like we'd hoped. She seems so happy and healthy and to be doing so well, but a baby's gotta gain and she hasn't. Alas.

Since she hadn't lost weight either, the doctor is going to give us another week or so. I'm going to try to increase feedings to 9-10 times in a 24 hour period (that's a heck of a lot, in case you were wondering) and see if we can get some extra calories in her that way. We're also going to keep trying to push the bottle in hopes that we can add some formula to breast milk and get some more calories in that way, if Clara will cooperate.

We're still going to the mountains. I'm hoping that the time away will help us all relax and give us the time and space to focus on feeding, feeding, feeding 'round the clock. I have to say that I'm a little discouraged about this whole thing. I feel such a strong maternal instinct of wanting to provide for my baby and not feeling like I'm doing it adequately is very difficult. There is a deep sense of failure, rational or not, that I'm just struggling to shake. It's tough to make a baby eat who's not in the mood to eat though. And it's a tricky balance of following Clara's lead and trying to do what she wants and also watching the clock enough to realize that if three hours have passed and she hasn't eaten, she really needs to - like it or not. So, despite my sadness and frustration and general discouragement, I'm trying to remember that I have so much to be thankful for:

* I'm thankful that the battles we're fighting now are as simple as an additional six or eight ounces of breastmilk a day in an otherwise happy, healthy baby.
* I'm thankful to be fighting this battle at home, in our own space, and on our own turf and not within the four walls of Brenner Children's Hospital.
* I'm thankful for the continued support and love of family and friends who help talk me off the cliff and wipe my tears away.
* I'm thankful for an incredible pediatrician who spoke to me with grace and compassion today, despite my obvious disappointment. I'm thankful that after offering all the suggestions that he could think of, he stopped, laid his hands on Clara, and prayed for her, knowing that God is the one in whose hands she rests.
* I'm thankful that Clara has a sweet and happy disposition and that she is fun to be around all day long.
* I'm thankful that caffeine doesn't seem to affect Clara at all, 'cause I'm consuming a lot of it.
* I'm thankful that we live in a day in age where there are lots of "options" for feeding babies... dozens of different bottles (we're trying them all), lots of formula options for extra calories, and diligent medical care that will be sure that Clara gets what she needs - even if it means putting the NG tube back in.
* And most of all, I'm thankful for Clara's life and that we get to struggle with a fairly ordinary problem. This is serious, for sure, but it's not anywhere near as critical as some of the other obstacles that she has already overcome, by God's grace. So, we'll pray and trust that in God's timing, she'll overcome this one too.

Keep praying for fat rolls. (Sure wish I could just share mine with her!)

June 29, 2011

My freshman year at Wake Forest I took a French class that was required as a part of the foreign language divisional. Despite having had thirteen years of French before showing up at Wake Forest, my skills were clearly lacking since the placement test put me in the “beginner” class. I could never have known that being placed in that class was one of the greatest blessings I’d ever know. I met Wendi through that first class in the fall of our freshman year and thus began a friendship that has now lasted twelve years and is going strong. We have been through A LOT together. She’s seen me through heartbreak and love, through sickness, through broken friendships, spiritual doubt, deepened faith and a whole lot more. We have lived together and traveled together and crafted together and celebrated countless birthdays and occasions. We’ve cooked meals in dozens of our kitchens and taken road trips to the beach and Georgia and beyond. We’ve shared our history and our lives in a way that makes me feel like she’s never not known my heart as well as anyone could. She has held me while I cry, prayed for me when I couldn’t find the words and encouraged me to chase my dreams. Wendi is one of the most selfless people I’ve ever met. She loves and gives and serves others far beyond what is expected from the call of friendship. Wendi is truly the best friend anyone could ever ask for. I’m so thankful she’s mine.

I would never have imagined twelve years ago that a day like today would have happened. Wendi now has a baby girl born just a week apart from Clara. It wasn’t planned like that, but it sure was special to share our pregnancies together and to dream about what it would be like to raise these two sweet babies alongside each other. There were days in the hospital when I thought that dream would not come true. But today, it played out more beautifully than I could ever have imagined. Wendi, Chloe, Clara and I all took a walk together this morning, zig zagging through the streets of Wendi’s neighborhood and talking about life, mothering, how tired midnight feedings make us, and the other idiosyncrasies of being a new parent. After we finished walking, the two of us sat on her couch together and nursed those baby girls side by side. Then all four of us piled in the cars and went out for lunch together. I am so very excited that somehow God has planned for Wendi and me to share this chapter of our lives together too. What a gift.

Today Wendi turned thirty! It’s an important milestone and I’m glad I got a chance to celebrate with her a little. Pushing strollers and nursing babies is a far cry from some of the birthdays we’ve celebrated in the past, but I’m so thankful for life right now and the beautiful picture that it is. Happy Birthday, Wendi! You’re a wonderful mother, a beautiful child of God and an amazing friend. I’m glad you were born.

Here's a photo walk of just some of the good times we've shared (post-digital-camera era.... I didn't dig out and scan the ones on film.)

Wake Forest Days

Students at a football game...

Our senior year

One of any number of birthday celebrations at Mama Davis'

Somebody's birthday at my first apartment post-college

Shenanigans

Wendi visits camp where Robert and I met to scope him out and see if she approved... (she did)

June 27, 2011

It's been a busy Monday of doctors' appointments, but we have more good news to report. This morning we met with the cardiologist and had an echo done to evaluate the state of Clara's pulmonary hypertension. The drug sildenafil that Clara came home on is to treat pulmonary hypertension and we were told to expect her to stay on this medication for many months since most of these babies still battle varying degrees of pulmonary hypertension for quite some time. Last week when we pulled out the NG tube and had to begin giving this medication orally I had a small panic attack. Clara was spitting it out and we were having a horrible time trying to get it in her. I called cardiology in a tizzy last Thursday, begging to drop one of the three doses and asking about the repercussions of her missing the doses that she either spit up or threw up. They told us just to do our best over the weekend and we'd re-evaluate on Monday at the appointment. Today, we were so pleased to hear that her echo looked completely normal. [SIDENOTE: It was so fun to see some of the sonographers we loved and saw every day for awhile when Clara was so very sick. One of them scooped her up today and started parading her around the office saying to anyone who would listen, "This right here is a MIRACLE baby! Look at this baby who lived because of love and prayers! Let me show you this incredible miracle I'm holding...." So precious.] The damage that her right heart sustained while on ECMO when she began to have right-sided heart failure has completely healed and reversed itself. They said that her heart looked totally normal and healthy and that they could not even see any indicators of pulmonary hypertension any more. Soooooooooo.... we get to stop taking sildenafil! And we don't follow up with cardiology again for another six months. This was better news than we could even have allowed ourselves to imagine! Clara is especially relieved that her dad doesn't have to force that stuff down her throat any more. (Her daddy is pretty relieved, too). Goodbye and good riddance, pulmonary hypertension!

After that appointment, we went back to the 6th floor and paid a quick visit to some of our friends in the NICU and PICU. It was absolutely surreal to get off those elevators and walk those corridors like we did so many times for eleven weeks, but to be pushing Clara in her stroller and be on the outside with her. It was really indescribable. It was good for our hearts and souls to see a few of the people who we came to love so dearly during our time at Brenner. While we don't miss anything about being in the hospital, we do miss the people. They were like family to us and loved us so well. It was good to see some of them again.

We had about an hour and half before our appointment with Dr. Turner, and not really enough time to go home, so we went and got some lunch. Mom and I decided to go to Cagney's, the diner around the corner where we used to eat lunch a couple of times a week while Clara was in the hospital. It was another surreal moment to be sitting in that restaurant, drinking the same sweet tea and eating the same fried okra with Clara in the booth beside us, snoozing away. We had so many conversations in those same seats about medications and numbers and doctors and prognoses and diagnoses. And there we were, with Clara, just soaking her up and praising God for bringing us to this point. There were many days we sat in a booth there and would never have thought today would have come. It did. Boy, did it feel good.

We headed back to The Baptist to see Dr. Turner this afternoon. He was also very pleased with how she's doing. He said from listening to her breathe and by looking at her last chest x-ray (which was in May) that he could not tell that she had ever had a diaphragmatic hernia. He said her left lung is now full size (or close to it) and that she's doing just great. He gave us warning signs of some of the complications that may crop up in the future and things to be on the lookout for, but sent us on our way with another follow up in three months. Goodbye and good riddance, hypoplastic left lung!

The scales all differ, so it's hard to say exactly how much weight Clara has gained since pulling the NG tube last Wednesday, but our guess is at least a couple of ounces, maybe as much as four or five. We pray for continued weight gain, lots of good eating, and some deep and restorative rest in between. Clara has been spitting up/throwing up a decent bit the last week or so, as many babies do, so we pray that this is not enough to cause her to stop gaining weight and doesn't require further treatment.

It's hard to believe that she is on no medication now besides the Vitamin D that all breastfeeding babies take. She has no oxygen. She has no feeding tube. She is in great health and continues to amaze and surprise the entire medical community. Tomorrow she has physical therapy and we'll visit the pediatrician again on Thursday for an official weight check. Then, on Friday, we're heading to Beech Mountain for our first overnight to celebrate the Fourth of July with family.

In addition to the near out-of-body experiences of walking down the 6th floor hallway and eating lunch at Cagneys today, I had a third rush of emotion tonight as I nursed Clara before putting her to bed. I held her in the glider, in her room, clean and warm from her bath and smelling faintly of the baby lotion we'd coated her down with, just breathing in her very essence. We rocked, she ate and snoozed, and I prayed through tears a prayer of tremendous thanksgiving and gratitude. I will never understand exactly why Clara was born with this diaphragmatic hernia. Even less though, do I understand God's grace and mercy for us and the enormity of the miracles He has performed and continues to perform. I just can't believe how blessed we are and what an incredible treasure this sweet baby is. There aren't enough words to express how full my heart is and how thankful I am to our Lord for his never-ending mercies. Suffice it to say, that today's reports have left us tickled pink.

So, the doctor today was - once again - surprised by how well Clara has done. She said something like, "I don't usually see babies who are doing this well... I'm not quite sure what to say." But we're giving it another shot! I'll breastfeed exclusively for the next eight days and when she goes back to the pediatrician next Thursday if her weight gain has been adequate, we'll be able to stay free of the NG tube. The only downside of this is that we're back to trying to get that nasty pulmonary hypertension medication in her orally (three times a day - ick!). So any of you out there who are still reading, please pray hard this week that Clara continues to eat well and gain weight....especially during the night when we'll have to wake up sleepyhead and try to make her eat. I'm a little anxious about this, but oh so hopeful. To me, this feels like the last big hurdle before I can take a deep breath and relax a bit. Eat, Clara. Grow, Clara. And take your medicine!!

June 21, 2011

There's not much I love more than a glass of sweet tea, but here's one thing for sure:

She truly is sweet. Great report from the pediatrician yesterday; Clara gained nine ounces this week and is now weighing in at 11 pounds, 12 ounces. We're replacing her first nighttime gavage with breastfeeding and beginning the process of weaning that NG tube. Tomorrow's appointment is with the developmental pediatrician who is an eating expert. We'll see what she has to say about our progress.

June 19, 2011

Whew.It is much harder to find time to blog with Clara here at home with us.It’s a pretty fantastic problem to have.Clara continues to sleep really really well at night (12-13 hour stretches, uninterrupted thanks to enteral feedings through her tube).This rest is great for her and is helping her grow.Robert and I are still up every three hours to start those bolus feeds and for me to pump, but we’re so very thankful that this baby rests well.Those long hard stretches of sleep at night mean that she’s not really that into napping during the day.She takes 3-4 thirty minute naps throughout the day and that’s about it.But I’ve figured out her routine (for now, at least… I’m sure that since I’m writing that she’ll change it up immediately) and have learned her cues pretty well.She eats every two and half hours or so, stays awake and plays for awhile after eating and then takes a thirty minute nap before it’s time to eat again.We’ve gotten a good naptime routine down (paci, lovey, mobile, her sound machine and some Classical music) and she will put herself down for a nap in her crib pretty well, although her favorite way to nap is in the stroller on a walk or in the carseat during a drive.Our nighttime routine is coming around too – a bath (which she no longer hates), jammies, swaddled up for reading books, singing a few songs, saying prayers and then off to her crib with her sound machine, Mozart and a lovey.What we were always told about a NICU baby seems to be true – she sleeps just fine with lights and noise, maybe even prefers it to dark and quiet.

When she’s awake, she’s happy.Oh my, is she happy.We keep saying, “I guess if we’d been through all she’s been through, we’d be pretty happy too,” but I know that many babies who have faced chronic sickness like this don’t have the pleasant disposition that she does. She is very rarely fussy. She is almost always smiling and loves to babble and talk – especially when you’re singing to her.I think she’s trying to join in!She’s very social and likes to be talked to and be interacting with people.She loves her swing, her bouncy seat, her stroller and her playmat.Of course her changing table is a favorite spot, too, as is naked time.We’re working on tummy time to build up her strength and although that’s not her favorite, she’s doing better with that every day too.Her favorite place to be is outside.She can’t get enough of the fresh air, the trees, the birds and the sounds.Her eyes open so wide and she just takes it all in. The slight respite from the oppressive heat this week has been nice.Even on sweltering days though, we’ve found ourselves on the screened-in porch a lot.We’ve made one trip to Costco, one trip to the grocery store and an epic outing to Greensboro for me to order a bridesmaid dress.Even though she’s been such a trooper through that, the excursions and the very few visitors we’ve had do wear her out, so we’re trying to make a conscious effort to keep things quiet and low-key as much as possible.

We’ve been to see her pediatrician twice – once on the Friday after discharge and again the following Monday.She gained three ounces in her first weekend at home (average of an ounce a day!) and we’ll visit the pediatrician again tomorrow for another weigh in.She’s been eating really well, so I’m expecting more weight gain to be shown then.All of our follow up appointments begin this week.I’ve been warned that the feeling of “normal” that we’ve experienced the last week or so might feel a bit like a honeymoon coming to an end this week as we visit lots of doctors and are reminded that we still are caring for a sick baby.We will be following up with: her regular pediatrician, pediatric surgery, cardiology (for pulmonary hypertension) a developmental pediatrician with a program called “Kids Eat” for feeding issues, physical therapy, and speech/hearing.That’s a lot of appointments, but we’re prayerful that we’ll get good reports, that we will continue to see weight gain which seems to be the biggest indicator of health, and that we can begin taking steps towards weaning her off the feeding tube for good pretty soon.

So, we’re all doing well!I’ve been so soso so blessed to have my mom spend most of each day with me since we’ve been home.It’s like my own personal baby-nurse.She’s helped me get the house back under control (apparently spending eleven weeks at the hospital will make a lot of things fall by the wayside!), made sure we had meals to eat, given me adult interaction, and been an enormous help with Clara.We’ve been calling her “The Burp Whisperer,” because she can get a burp out of Clara when no one else can!The timing for Clara’s homecoming has been great since the academic year at Salem was just wrapping up and she’s been available to help in so many ways.I’ll be sad when the day comes that she has to leave me all on my own!

Okay, here’s what you really want to see.Photos of Clara at home!

Hanging out on the screen porch

Snuggling Dad in the recliner

Taking a nap in my very own crib

I love my changing table!

I spend lots of time in the glider with mama

Family's first walk

This stroller is fantastic!

Loving her swing (thanks, cousin Eleanor!)

Patchwork baby on patchwork quilt

Kicking my legs and sticking out my tongue

Rufus is never far away

This bouncy seat is pretty fantastic, too (Thanks, cousin Caroline!)

My first walk with my destined-to-be-BFF Chloe

Snuggling Big Daddy

Playing on my playmat (Thanks, Cathy!)

So much to learn!

Listening to Sweet Mama sing on the porch

A few new additions to the nursery

What a wardrobe! Thanks for all the hand-me-downs from cousins and from my buddy Palmer!

lots of hairbows...

Couldn't resist this clock for her literature themed nursery

Family shot

Life is good. God is gracious. We are continually thankful for this special blessing.